Ready! Set!! CHARGE!!! (I Published A Book!)

So, after something ridiculous like 13+ years, I finally took the first two years of content here and packaged it into a book.  It's a book for anyone wanting a glimpse of medical life, advocacy, humor and perseverance.  I mean, as much as we were hurled in those first two years, there are still some funny things I wrote that I still call upon today.

The book is on Amazon here:  Ready! Set!! CHARGE!!!

If you like it, please leave a review - as Amazon is an algorithm and is where books go to die a miserable death of invisibility.  If you don't like it... you never heard of it, don't know anything about the book and certainly don't know of this 15-year-old blog.  😆

Andi Bean Is A Teen: Thirteen!

 So.... today marks a huge birthday -- 13.  Yes, our lil' Andi Bean is a TEEN!  And thus, her traditional birthday video which she approved!  

Andi Bean Is A Teen

Andi Bean Turns 12!

 Andi Bean Turns 12!  

...wait, what?!?  When did THAT happen?

Life is just going by quickly. It seems quicker and quicker when you have someone like Andi to measure time against.  Seems like just yesterday we were juggling therapy sessions and medical bills.

Andi just graduated 6th grade. Cruising through middle school. She spent the year as a cheerleader and absolutely loved it.  Her personality shines, most often being deemed by followers as 'sassy!'  

The tradition started long ago was to create a video to showcase Andi's year in a Birthday video. The first one was created to celebrate her turning three, and every year subsequently.  This year's video is a little late because I was in Germany for two weeks working on my big annual event that was rescheduled to conflict with birthday #12.  Therefore, while her Dad and step Mom took her to Disney World, I promised to keep the video unveiled until she saw it when I got home.  Today is the day, having landed just last night.  And so... without further adieu, I offer up 'Andi Turns 12!'

Andi Turns 11

Every year, we commemorate the year with Andi's birthday video. Every year, it is a surprise unveiling. These past several years, she has voiced her opinion on what songs I can or can't use, or wants to know what songs I'm using.  I don't tell, and pretty much do what I want, because of all the things I saw in the parent handbook when I signed up for this gig.... it was that.  I get to do what I want!  😂

So, without further adieu:  Andi Turns 11

And for those that like to roll down memory lane like me, the previous videos await:

Andi Turns 3 (0-3)

Andi Turns 4

Andi Turns 5

Andi Turns 6

Andi Turns 7

Andi Turns 8

Andi Turns 9

Andi Turns 10

Connecting The Dots

One thing I learned from a near 11 years of parenthood, trust your gut.  This week, I noticed a few things that were 'different' with Andi. First of all, I mentioned to her once or twice, 'your balance seems off... you doing okay?'  She seriously seemed to be a bit more wobbly, almost running into a few things when moving too quickly.  The other thing I noticed was her labored breathing.  I mean, she has had a runny nose with itchy eyes, a sore throat all week. Her breathing seemed to be more work. I attributed all of it to her seasonal allergies.  I mean, even my eyes are itching and nose is drippy. Plus, in our new place, I've been leaving the windows open for a wonderful cross breeze before the horrid heat & humidity really kicks in ... so again, I attributed this to her allergies. (yet, still left the windows open!)

Before bed, we had decided to give her not only the allergy medicine she rarely takes, but some eye drops for allergies that her Eye Dr. suggested. Today, when I woke her for her bath, she mumbled something about not being able to open her eye.  I assumed she meant that the allergy meds had her so groggy that she couldn't wake up, but when I finally turned on the light, I could see my very own version of Rocky Balboa trying to look back at me.  Her right eye was completely swollen shut.  The other eye was sticking together and swollen.  I got her in the tub and gave her a cool compress for her eyes.  By the end of the bath, her eyes were open, but goopy and irritated.  You know when you have dark circles... but the circles under your eyes are a nice shade of red?  Oh yeah.  So, I canceled school for her, canceled my morning appointment, and got her to the Dr's office.

Turns out this girl has an ear & sinus infection.  The goop coming out her eyes is the infection and hello... contagious!  So... we're on a nice strong antibiotic (Augmenten) and antibiotic eye drops.  Additionally, I'm having to wash all bedding, towels, basically anything she's possibly touched in hot water.  It is believed she will be feeling much better rather quickly.

But the point of this post is a reminder.  When you recognize something is off, seriously, pay attention to that -- often times, it really does mean something when you take the time to connect the dots!

The Gift Of Life: 10 Years In The Rearview Mirror

Ten years ago today was undoubtedly the longest day of my life. It didn't help that the night before was riddled with interruptions galore by several groups of medical staff trying to get an IV into a baby - causing her to cry and scream throughout the night. A night I felt so incredibly powerless to help soothe my baby, nor felt strong enough to tell them where to take their IV and shove it.  At that juncture, I didn't yet know I could dictate action, or tell them to stop. Ten years ago today, our Cardiothoracic surgeon/hero, Dr. Stephen Langley and his team, worked to fix the defects in my 13 week old baby's heart. It was her fourth surgery and absolutely her most critical.

Andi was enduring congestive heart failure pretty much since birth.  Her heart was working so hard, and yet causing so many problems, that she would've died had they not gone in at such a small, frail time to make the necessary repairs. Andi needed a Complete AV Canal - a complicated repair.  

Complete Atrioventricular Canal defect (CAVC)

A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.

Andi had a hole in her upper chamber, a hole in her lower chamber, and one large valve that needed to be turned into two small valves. The surgery would take all day and she would be on ECMO - a machine that sustained life, while they repaired her heart.

Our favorite nurse from the hospital floor we spent most of the previous four months stopped by to wish us luck the morning of surgery, Misti.  Since we hated our night nurse who insisted on torturing Andi the night before, we asked her if she would escort Andi to pre-op.  One of the first times we as parents, learned we could call the shots.  Misti whole-heartedly obliged and said not to worry, that she would take care of it.  We felt much more comfortable having her walk with us behind Andi's crib as they rolled her through several white-walled hallways, under what felt like severe bright lights. A labyrinth of white on white.

When we got into the pre-op room, we were met by her anesthesiologist, Dr. Woodward. This was his second time working on Andi, as he also handled her on her first surgery - bilateral choanal atresia. He asked how she was doing and we said that she was exhausted from being tortured all night as they tried to get an IV in her. He slammed his hand down on the counter and begged, 'why do they do that?' He continued to admit that he could give her something and get that IV without issue and all of us could've headed into this big surgery more rested.  This was a big deal to me, because it further showed me that I needed to use my voice and advocate for Andi.  Here it is ten years later, and I can still envision Dr. Woodward, and hear his voice. 

As we said our goodbyes, Misti walked us to the cardiology unit waiting room.  Thankfully, they did not put us in the usual waiting room, but in a private area, so we didn't have to endure the sounds of other people. They gave me a poster board, some pens, stickers, and had me capture some things about Andi.  A crafty distraction, and one I appreciated.  I remember my whole body just seemed to vibrate all day - as if I had too much coffee.  Yet, it was caused by fear and a lack of sleep. I was jumpy. I was anxious. I was more afraid than I'd ever been in my life. And despite being surrounded by family, I felt alone.  No one could say or do anything to reach me. I just had to suffer through it.

It was the longest day, and each time the nurse would call with an update, my stomach would churn. She would give an update like, 'she is sedated and intubated now.'  Appreciated, but given the situation, that nearly caused an ulcer.

I want to say they finished around 2 or 3 p.m., but I think it was even later than that, like closer to 5 p.m.  I honestly don't recall, as it was such an incredibly long day.  Dr. Langley came out to give us the update and he said she was doing well considering what she had just endured, and gave us a glimpse of what the next several days would be like... I think we all just professed our love to Dr. Langley for his work, his gift, and his efforts to repair our baby girl's heart.  I'm sure there were many tears.  

Andi would be sedated for days, making it so her body could rest and recover having the least amount of work to do.  She was cold to the touch and had more machines and monitors around her than ever.  Her PICU nurse gave us the rundown of what everything was, what it was doing for Andi, and why.  I remember being completely impressed and overwhelmed by the entire scene.  The room was dedicated to the baby in the crib, and all the machines around her, and little to nothing else. There was one or two chairs off to the side. The rest of the room just worked to sustain life. I have always made a conscious decision not to share pictures of what she looked like, but here it is the tenth anniversary of that incredibly difficult day and I think that stark memory appropriate to share today.

Because as strong as she is, and as much as she's been through - this surgery gifted her life. This surgery was absolutely critical to her.  We are, and forever will be humbly grateful to the many hands that worked hard to give us our baby girl back with a repaired heart that no longer was killing her. And here we are 10 years later, wow.  She just had her every-other-year cardiology check-up, her repaired valve still has a mild-to-moderate leak, but it isn't anything that is going to hurt her. Just something we will continue to monitor.  Like her cardiologist said two years ago, 'Dr. Langley couldn't have done a better job if he tried,'  Therefore, on this extra special ten year anniversary, I shout out a little louder our gratitude to Dr. Langley, Dr. Woodward, and all the other Dr's and Nurses that helped gift Andi life.  We are forever grateful and appreciative of your work and we will never forget you.
Thank you! Thank you!! Thank you!!!

Andi Turns 10!

Here is our yearly tradition, the birthday video. This is the 8th video made, the first one showcasing 0-3, 4, 5, 6, 7, 8, 9, and now 10... so much fun to capture her growth, development, and milestones in a visual that she can always access to buoy her on days she needs inspiration.

Double digits baby!!!  So proud of you! 

Celebrating Milestones: The Making Of A Mini Me.

Even at nine, we still experience the joy of celebrating small milestones.  Sometimes silently.  Sometimes loudly. But, despite the hurdles of years past, we still notice, pause and appreciate each and every little occasion.  We have to.

Almost a year ago, we moved into our house.  This amazing house with a glorious pool in the backyard.  Even today, Andi talks about her house with affection, or rather, appreciation.  Soon after we moved in and the dust settled, we had Andi start private swim lessons in our backyard.  Without the distraction of others around her, she would be better able to hear the instructor, and pay attention to the lesson.  Up until that time, we had never put Andi's head completely under water.  Never.  Not washing her hair in the tub, not by accident, not at all.  Enduring three sets of ear tubes to cease her chronic ear infections, I was a bit too cautious on getting her ears wet.  First and only kid, let alone one with complex medical issues, don't judge.  I was simply sick of all the antibiotics, the Dr's appointments, and that made me hyper-hyper aware of the things I could do to prevent more of the same.  

So,  I believe it was on her second lesson with "Gene-Gene, the swimming machine" where he got her to put her head under the water, with ear plugs!  Sadly, we only had a month of lessons before the pool had become too cold for her to continue through the fall. With her BAHA surgery, we were a bit delayed in starting back lessons while we awaited her abutments to heal and be cleared for water.  Once we started back though, the growth was obvious.  Her maturity, her strength, her determination and her love of the water all seemed to roll into one perfect celebration.

This is the first time Andi has ever actually swam. Filmed last week.

Then this afternoon, while we spent the day in the pool, I filmed this to showcase the monumental (to me) realization of how incredibly far she has come and how she has shattered another milestone.  She seemingly prefers being underwater these days.  Probably one place where her proprioceptive sense is most easily actualized.  

Celebrating Andi Bean is easy to do, but as we get further and further away from those dark days we were forced to endure, it's important for us to pause to celebrate these little milestones -- especially when they also fill her full of joy.  

I see Andi playing around in the pool.  Learning how to swim underwater to collect fish or rings at the bottom of the pool; walking hand over hand along the edge of the pool to deeper water; jumping up and down in the water; and I recognize my youth in these instances.  It instantly flashes me back to my summers spent at the pool with my friends, where we spent all day, every day in the pool.  From Memorial Day to Labor Day, there were few other places to find us.  So, seeing Andi do things I used to do in the pool, just further fills me with joy.  Not only because I see her progressing with her love of the water, but it reminds me of a simpler time in my own life.  I love that we're able to give her a childhood that mirrors one of my own, that is filled with joy, discovery, learning, growth and one incredibly zesty personality that is really starting to blossom.  She's not just a mermaid... she's a mini me. 

BAHA -- The Grande Finale

Last June, we went to see Dr. Steve for Andi's yearly audiogram.  After completing the test, he sat down with me and said he believed he could get Andi hearing a whole lot better than she currently was.  Intrigued, I listened.  Andi has worn an over the ear hearing aid since she was five months old.  Sound would be amplified by the hearing aid and travel through her ear, which was often congested - further diminishing quality sound.  Dr. Steve said, at 8 years old, Andi would definitely benefit from switching from a over-the-ear hearing aid, to a BAHA -- a Bone Anchored Hearing Aid.  These were both on the right side.  Her left ear is considered deaf or profound hearing loss.

He did a hearing comparison between the two devices - putting the BAHA on a soft band (headband).  The audiogram was all the proof we needed.  Andi left with a loaner BAHA on the head band and when we walked out of the office building, she stopped.  She questioned, 'what's that?'  I stopped and listened.  I asked her, 'do you mean the bird singing?' She replied, 'Yes!' So I asked pointedly, you haven't heard that before?  'No.'  Her eyes lit up and she was giddy.  I cried most of the way home.  It's amazing what we all take for granted, and yet, kids like Andi remind us to pause and savor what we have -- because she does not have it.  That day was simply joyful.

When we checked in with Dr. Steve again, he said he believed he could make her hear even better. At this appointment, we went from having a processor on just the right side, to putting a processor on both sides of her head.  With technology, they can program the sounds captured on the deaf side, and send it to the ear that hears.  Thus, possibly giving her a 360 hearing experience.  Andi noticed the change, and for the first time in her life, started hearing things coming from her left side.

At the end of November, we went in for part one of the BAHA surgery.  Dr. Torino drilled two screws into the bone behind both ears.  One screw holds a post, the other is a sleeper screw in case something happens to the other screw. We would wait six months to heal from this, enabling the bone to solidify around the screw. 

In mid-May 2019, we went back in to put the abutment on each post.  The abutment is the 'snap' that sticks out of her head - to which the processor clicks into.

So, yesterday, Andi met with Dr. Steve to have her BAHA processors attached to her new abutments! 

Attaching to abutments:

Andi's commentary:

Andi will 'rock you!'

Booth testing:

The audiogram showed improvement in overall hearing.  Below is audiogram comparison.  On the left is the over-the-ear hearing aid (A) -vs- the single BAHA processor on the soft band (B).  On the right, was yesterday's audiogram with the dual BAHA processors clipped directly to the abutments.

Her audiogram showed an improvement, but he said that she will notice the difference more than her audiogram will show.

But, this is Andi... she wanted to tell you herself:

Dad, I hope you enjoy hearing her use of 'Whatevah!'  I have the feeling that is a word I will likely suffer for quite some time. 

Andi Turns 9!

While we celebrate the birth month (2 weeks before, 2 weeks after the actual birthday) we leave you with this video to enjoy a look back on the incredible year she has enjoyed!

Surgery #11 ... but who's counting?

This morning marks yet another sarcastic celebration, surgery #11.  Oh yeah, cuz when I was pregnant, I just couldn't wait to hand over my kid to not just the surgeon, but the anesthesiologist, eleven separate times.  Oh yeah, it's every parent's dream come true.

Sarcasm aside, I've been awake well before the rooster.  Not out of fear, but the horrid kink in my neck.  Must have been that 15 minutes of working-out I did two whole days ago.  Won't be doing THAT again anytime soon.  *kidding!*  But yeah, surgery days tend to conjure all the emotions and fears that parents like me choke down day after day, stifle with food & beverage, or keep at bay with a series of bad jokes.  Ok, not all the jokes are bad -- but, whatever.  We all have our ways of coping. 

Last night, I stole this picture from someone on Facebook. 

Reading this really resonated with me and our experience.  In fact, I believe I wrote about it in this blog.  Yes, third post in August 2010:  http://amazingandi.blogspot.com/2010/08/kaiser-permanente-rent-baby-program.html  
This is so true.  The real work started when I got home because I had no help.  I had to learn how to place the OG tube, (tube that went down her mouth directly into her stomach -- every 2.5 - 3 hours)... I had to learn how to push her medicines through the OG tube, and later, the G-Tube.  How to take care of a leaking g-tube site.  How to know when her breathing was too fast or too labored - because her diuretic dosages were off.  I remember one of our first days home alone from the hospital like it was yesterday.  Her breathing seemed more labored, and I didn't yet know, nor trust, my gut -- my parent's intuition.  I remember waiting until a respectable hour, either 6 or 7 a.m. to page her pediatrician -- who told me to call day or night, but... I was trying to be considerate... little did I know he was probably already at the hospital making rounds to check on the kids he saw.  When I got him on the phone he said, 'without a doubt, if you suspect something is different... please take her to the ER.  Now.'  So - that we did.  Turns out her diuretic dose was off.  It was a constant battle of "too wet" or "too dry" -- the diuretics helping with the battle between her heart defect, and the pressure that was putting on her lungs.  Blue blood -vs- red blood.  Oh my -- I do not miss those days.
In any case, the picture above speaks volumes to me. The NICU was the easy part.  The rest of the year, was easily the toughest year I've ever endured.  Fast forward to almost our ninth year here... and Andi is thriving.  She's been discharged from PT at school, reduced to a 1/2 hour a month "consult" of OT at school. We had her evaluated for outside OT therapy this week and they deemed her not needing this service anymore.  We've graduated, and writing that fills my throat with emotion that I choke down.  We have been in some sort of therapy since October 2010.  Yes, her early intervention started when she was home from the hospital - post heart surgery.   In two weeks, her Medicaid coverage through the Katie Beckett Deeming Waiver - (secondary insurance that covered easily $1200. a month of therapy services) - will cease to cover her, because she no longer receives 5 hours of therapy services a week.  To all the people that don't want to support social service programs, state provided assistance -- kids like Andi are the gleaming beacon of light that programs like this help.  It's because of the past four years of outside of school services she has been afforded through this program, that helped get her here.  There were many hands at work to help Andi get to where she is.  I often hear, it's because of you - and what great parents you are... and I beg to differ...  I mean, yeah, I'm fabulous and all *insert Cher hair toss here*, but it's really the many hands that have helped guide, steer, strengthen, invested, and taught Andi -- that have got her to this level.  In addition to the Princess herself -- she herself has made it all of it happen.  Without her work, perseverance, strength and downright stubbornness -- none of the others would have such an effect.  So, I yet again say thank you to the many hands that have helped lead us here.  And, to the Georgia Katie Beckett Deeming Waiver program, I say, "thank you, but you are no longer needed!"  Honestly, without that program, Andi would not have had 3 hours of therapy a week to help propel her to her current level of awesomeness.  

So, back to today... surgery #11.  A fairly "minor procedure" but none-the-less, a procedure.  We are going in to have the abutments attached to her BAHA posts.  So, end of November last year, her ENT surgeon, Dr. Torino, put the screws/posts into her skull, behind both ears.  We've waited the 6 months to put in the second part - which is the abutment.  The 'snap' that will stick out of her head - so she can attach her processors to, once the skin heals.  So, when we get there (a few weeks) -- she will lose the ugly tan headband that her processors attach to - and she'll start connecting those directly to her skull. It is likely that her hearing at the higher octaves will improve, due to the direct connection.  Being a girl, she'll easily be able to hide her processors under her hair.  Hopefully, technology will continue to advance, and those processors will grow smaller and smaller.  The process of today's surgery is that she will be put under, and Dr. Torino will press on her skull firmly to locate the posts. Once she determines best location, she will basically take something like a paper hole punch (but for the skin) and open the area to access the post, and screw in the abutment.  Ooh, you're not eating ... are you?!  Sorry - I'm numb to all this shizzle.  She won't be able to wash her hair for a few days, and won't be able to put her head under water in the pool for a few weeks - while we let the skin heal around the abutments. 

So... it's a quick, "minor" procedure - because putting the posts in was the tough part of BAHA (bone-anchored hearing aid)... but, it is still a surgery.   So, put out your good vibes for our lil' Andi Bean - and let's all energize this to remain 'a minor procedure.'  

The Village

Here it is Mother's Day 2019, and I'm saddled with the question, 'What Does Mother's Day Mean To Me?' As we all get older, and we lose people close to us, these Hallmark Holiday's seem to shift meaning.  For me, I lost my Mom less than two months before my wedding in 2005.  While, I'm not that sharp to do the math, I believe that was a long ass time ago.  It doesn't matter.  There isn't a day where I don't think of her, nor catch a glimpse of her in my personality.  She's with me, no matter where I go.  She built into Andi, and Andi never met her.  Regardless, it's fun to watch.  I see my step-Mom in Andi, and am thankful for that.  I see my step-sister in Andi, and am thankful for that.  Our young seem to be comprised of the people they encounter, those people shape them to become the people they are.  In turn, I can hear one of my best girlfriend's say, 'I am not necessarily a product of my family, but a product of the people I've chosen to surround myself by.'  Powerful.

In turn, these "holiday's" force me to pause and remember all the many, many things, many people, that it took us to get us where we are today.  Words like, "I don't know how you do it" flow over my ears on days like this, because I know that none of this was due to one person (well, minus her genius heart surgeon that "couldn't have done a better job!" (current cardiologist)...)  It took a village.  It took people not only supporting Andi, but those that rallied around me.  I think back to those dark days, where Kajsa - Andi's early intervention OT, was essentially my best friend.  Keeping not only Andi's torticollis stretched, but, my sanity in-tact.  Those in-home visits were crucial to home-bound people like us. 

But, again, on days like this - I don't necessarily stop to think of me.  I think of so many of my Mom friends who have lost their babies, their children, who - on days like today are hurting.  In our CHARGE community, it's too much.  So many of these Mom's are the ones my mind gravitates toward on days like today.  So, on that note, I tip my hat to you Momma. You have my heart.  Your children are on my mind.

And to my lady-friends who don't have children... you actually are a major part of it all.  You're a part of a village of women supporting others.  So, keep in mind - and I have specific ladies in mind here...  You were a major part of my village supporting me in crisis... so yes, you too, are celebrated.  With my whole heart, I thank you!

Parenthood isn't one person.  Motherhood isn't one person.  It's an army surrounding the child, the mother, the father, the entire family unit.  In good times, and in bad.  It's the village that holds them all up.  

And on that note, Andi's part two of her BAHA will be this Thursday.  Luckily, Poppa and Ginga will be coming to join me as we sit through a relatively 'easy' procedure.  However, it being her 11th, it still produces a level of PTSD for the previous procedures or surgeries that maybe weren't so easy.  It's again, a part of the village that comes to stabilize the unit.  That is what I celebrate on days like today.

Girl's Adventure

Andi and I decided to steal away for one more night and have an extended adventure.  We chose to head to the beach. I am getting ready to travel to Germany in less than two weeks and wanted to have a little extra special Mom/Andi time while she's on winter break.  Plus, no disrespect to my job, but I'm just not fully charged yet.  With the head-cold I've been saddled with this week, I highly doubt any of this break has been the restful recharge of the batteries I was seeking.  In any case, Andi and I found a smoking deal on a ridiculously plush resort in Destin, Florida and we drove down the three hours from Poppa & Ginga's.  It was mostly backroad country roads, but it was wonderful.  We loaded up on gas and Starbuck's and hit the open road.  The music was loud, the sunroof open, it was between 66 and 70 degrees.  Sometimes it would rain.  Other times, the windows would just be slightly open because honestly, we were warm.  It was rather windy once we hit Florida, but we made it safely, sanely and once we pulled into this posh palace - we were giddy.  

We valeted our car, because we frankly have way too much junk to deal with it ourselves.  Then, we're a Princess and a Queen... so we have to act like the royalty we are... (that's tongue-and-cheek snarky!) ... We were escorted to the registration desk by our bell capt. and what seemed like a lot of luggage for one night (mostly stuff we don't want to leave in the car!)  I forget his name but he was sweet with Andi.  But then the front desk lady got a hold of Andi's attention and before I knew it - our room was getting upgraded.  They also gifted her a bag of smores supplies, and a couple toys.  They couldn't have been more wonderful to Andi if they tried - it was really awesome! 

So, after we got to our room and settled in a bit.  Andi got to swim in our amazing tub.  Then we got dressed and went downstairs for dinner.  We had a wonderful view and enjoyed a fiesta, including roast cauliflower, steak, mac & cheese and frittes.  After dinner, we ran upstairs and dressed to go outside, a balmy 64 degrees, but windy - and headed down to the fire pit with our smores making ingredients in tow.  Andi was her usual friendly self and made friends with the other two pairs there.  They all were really sweet, and honestly, I don't think they really recognized she was hearing impaired.  Then a little girl came down with her Dad and little sister and was shocked that Andi was 8 years old and smaller than her.  Andi got rather quiet.  Abnormally quiet while the girl was around.  After they left I asked her, 'did it bother you that she said you were small?'  Andi admitted, 'yeah!'  So I had to have the talk about differences, size differences, what matters, what doesn't.  But I can't help admit that our little reverie of last retreat from our daily life wasn't jarred by the unknowing words of an adorable little girl that meant no harm. 

It reminds me that I need to fill Andi's bag with various armor to help her deal/cope/accept/defend herself from the eyes or words of others.  It's just another layer of this life to consider, to prepare for, to arm against.  

Andi is tough.  She's made out of spit, vinegar and steel... but, that doesn't mean she doesn't have feelings.  So, as we approach a new year, a new start, and new you -- please remember to tread lightly with others as you have no idea what they are dealing with... Also, choose your words with thought and grace... they stick and sometimes, they hurt without you knowing.  So, choose kindness.

And, if at all possible... choose the adventure... because you never know if  you'll ever get the opportunity to do it again.  I know these little jaunts, even just the one-day getaway have sealed a bond so tight between Andi and I - that only the teen year's will destroy!!  (HAHHHAHAHA!)  But I am glad we are able to do this every once in awhile because it means the world to me, and it means the world to her.  

Girl's Adventure awaits and hopefully tomorrow, we'll actually step foot on the beach!  

Rockin' The Mic On Christmas Eve Eve

Andi felt like performing this morning, with a background chorus of wind chimes.  

I was surprised we haven't already posted this song because she wanted to perform it at the school talent show this year.  We assumed everyone would be performing it - so we steered that song into Queen - because, well, it's Queen!   Her Dad also told her she would have to wear a beard like the character in the movie, and that quickly changed her mind.

Singing, This Is Me, I give you... Miss Andi Bean:

This Is Me!

Then, being the You Tube addict she is, Andi loves to watch and rewatch, and watch again and again, performances on Ameica's Got Talent.  This is a song she memorized watching Angelica Hale (SP?) a thousand times.  

Singing, Rise Up, I present ... Miss Andi Bean!

Rise Up

Time Of Our Lives / No Guarantees

More often than not, I sit down to write and have music playing in the background.  I usually already have an idea of what I want to capture and it's just a matter of sitting down and letting it pour out.  Today, as I sit here preparing to share biggest fears - I am taunted by Pitbull and the happy beats asking for the Time Of Our Life.  I can't help sing along.  Sometimes, it's the simple things like that that keep us from completely melting down.  

Two posts ago, I spoke of one of Andi's besties, who just had her abutments attached.  I believe I entitled that one, "It's A Snap!"  Well, obviously, that's a play on words - because this entire process is NOT a snap. It's not easy and it comes with no guarantee.  It's not carved in stone.  It's implanted in bone, and for a young child - that bone is still soft.  

Her Mom posted today that she's going under again tomorrow because "the post broke away from her bone and needs to be removed immediately."  

Refresher:  imagine a screw drilled into the bone behind your ear (your skull).  Let that heal for six months.  Then, go in and attach a post to it, that holds a snap on the outside of the skin, to which the hearing device clips into... a direct route to the hearing nerve.  Now, first of all, she is in no immediate danger, but her Mom asks for prayers and good juju for her... so please, send out your energy for our sweet friend Layla.  Let's hope the sleeper (once she heals) will deliver the foundation she needs for this to be the long-term solution.  That's all we are after... a long term solution to enable our kids access to their entire environment.  Whether it's sign language, a nurse to accompany them to school, Dr's who know their head from their ass - (sorry, but true), or modern hearing devices that bypass the problem area (Andi's middle ear structure)... I mean, we all just want the best for our kids.  Whether those kids are "typical" or "special needs" -- it's all one of the same when you cut to the chase ... we all want what's best for them.

I keep floating back to the line I've heard over and over these past eight & a half years, "I don't know how you do it!"   And I mean absolutely no disrespect, but my own family has said that to me.  Hell, I've said it to someone, cringed, and then spent the next year kicking myself that I said it.  Bottom line is that we don't have a choice.  If you're a good parent with the best intentions for your child - you do what you have to do.  Scary or not... we have to move forward trying to utilize the latest technology that gives our kids access to their environment.  It isn't easy, and it isn't guaranteed... but it is our hope that it works.

The CHARGE community is a solid foundation. The group is a united family brought together by the syndrome.  These people are, "my tribe!" These people get it on a level that sadly, one can't understand unless you've traveled that road.  It's a dynamic that I am, we all are, so grateful for.  So, Layla - this shout-out is for you... we absolutely love you!!!!  You've got this lil' lady!  

So, as you prepare for the holidaze.... please do a few things:
1.  donate blood if you can.
2.  hug your friends and family tighter than ever.
3.  help us spread awareness of CHARGE Syndrome and its effect on you.  Clearly, you wouldn't be here at Andi's blog if you didn't have an invested interest.  

Stolen from the CHARGE Syndrome Foundation website:

Overview

CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. This understanding leads the way to medical and educational interventions and therapies which help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.

And if unlike me, you have a few extra bucks laying around ... please consider donating to both of the following:

CHARGE Syndrome Foundation
CHARGE For Connor

While we are all seeking the time of our lives... there are no guarantees to/for any of it.  So, move forward with our entire CHARGE Syndrome family tucked in your mind.  Be kind to others and be the person who pauses and treads a little lighter with everyone.  Let our kids inspire you to do better, be better - and live that 'time of our lives', all of us.  

Holiday Concert Performance

Here are two videos featuring Miss Andi Bean in her holiday concert. This chorus is comprised of all the third graders at her school.  

It's A Snap!

One of Andi's bestie's is also going through the BAHA (anchor implant) upgrade.  She got her devices attached and was clapping... stopped and said, "I can hear myself clapping!"  I asked her Mom if I could steal a snapshot - to give Andi's audience a preview of what the abutment, once implanted (early June) will look like...

So, you see the "snap" behind her ear?  This is what the hearing device clips into and honestly, it improves their hearing - as it is a more direct route to the bone....which send the sound vibrations directly to her auditory nerve.  In any case, this is what Andi's future looks like.  I'm so glad that one of her bestie's in the community is going through it too - as it gives us someone to relate to on this solution.  I am excited for Andi's ability to hear better than ever.  Each instance we get closer to it - she definitely hears more. Which makes this all worth it.  It's a snap!

Jabber Jawing from The Mouth Herself

When asked about her day, and how her hearing was different ... I talked Andi into discussing it on a video that I could share with her friends.  Tonight, she learned the expression, "jabber jaw"  I'm not sure she fully gets the negative connotation - but she definitely fits the definition in this video.

So, at 8 years old, Andi is finally hearing on the left side of her head.  That ear has always been considered 'deaf or profound hearing loss' due to her tiny or nonexistent auditory nerve.  But the BAHA processor has been programmed to send sound to the right ear.  Dr. Steve wasn't sure or couldn't promise that she would be able to differentiate that she's hearing on the left side, but she says she can.  It's amazing what technology advancements have done for her, and how much her hearing has improved in six short months using the newer technology.  If it felt more appropriate, I would've given Dr. Torino (ENT/surgeon) and Dr. Steve (Audiologist) the biggest hugs ever today.  I think Dr. Tornio saw/felt my gratitude when I got all dewy eyed during our debriefing after the surgery.  I haven't felt so relieved and hopeful in a really long time.  Least I didn't come unglued.  I've done that a time or two.  Seriously, you can't even imagine unless you've been through the seven layers of hell, what it's like to have someone work on your child while you sit around with your thumb up your butt (sorry, Dad) in a cold, sterile waiting room trying to do whatever you can not to go to a really dark place.  Want to try on scary?  Have someone manipulating your once medically fragile child with dope while another drills holes in her.  Seriously... I can't imagine you can honestly relate.  Sadly, I feel rather hardened and nearly immune to it - but when I pause and really let it in - holy crap    - the fear alone is enough to strip wallpaper off a wall.  

So, enjoy this snippet from the horses mouth explaining how she is honestly hearing better.  When the implanted 'anchors' (fancy screws) have healed their full six months, she'll go under again for a less invasive procedure to have the abutments attached to that screw.  Then, instead of a snap on a soft band, the snap will be sticking out of her skull.  The upside of that gross description, is that her hearing will improve even more - especially in the higher pitches, because it will be a direct route to the bone.  One thing for those that visit, there's an item in the box, that Dr. Steve taught me how to mimic how Andi hears things.  It sounded very interesting.  

But today, we celebrate another small victory toward improved hearing.  Next stop on the journey will be singing lessons, in lieu of her gymnastics class that we simply can't risk during this six month recovery -- awaiting the bone to surround the anchors & sleeper anchors.  

Lastly, I couldn't be more grateful.  Without these two Dr's and their knowledge, we wouldn't be here today.  They don't know it yet, but Andi bought both of them small gifts at her holiday shopping at school with her tooth fairy money (this girl is loaded, btw.)  And we'll surely send them whatever she purchased for them with a personalized card.  I asked Dr. Steve today after Andi grabbed onto his arm and professed her love, if all his patients were as grateful.  He instantly proclaimed that Andi was in a class by herself.  I honestly believe he has a soft spot in his heart for her.  So grateful for these people helping propel us forward. Always wanting the best for your child, I appreciate having the very best surrounding her.  

Double The BAHA!

Tomorrow will be an exciting day.  We head to see the ENT for a post-op appointment.  I assume it's just a check-up on the healing of the dissolvable stitches. Afterward, we have an appointment with Dr. Steve -- our favorite audiologist, whom effectively started this whole BAHA journey to better hearing.  We'll have to wait around a bit, as our appointment with him is a bit later, but it will surely be worth the wait.  Andi's new hearing devices have arrived.  She'll be moving from the Oticon Ponto that has been a loaner/trial for the past six months - to the Cochlear BAHA.  She will graduate from one device to two, still placed on a soft band (headband).  The left sided one will be programed to send sounds it picks up on the left side, to her right ear that has the ability to process the sound. See, Andi's auditory nerve (nerve 7) on the left side is either absent or really, really small.  This nerve 7 travels through the auditory canal down the left side of the face.  This is why, when Andi is tired - it's often noticeable in the left side of her face -- this nerve also contributes to her facial palsy.  So, if you see her eye isn't as open as the right, or her mouth is a bit droopy on the left... this is all connected to nerve 7.

So... the reason we went with the Cochlear BAHA over the Ponto, is that the BAHA can be programmed with Apple devices.  So, when she's on her iPad, it will be like she's wearing headphones when paired with that apple device via bluetooth. With the ability to tap into newer technology, it is evident that her hearing experience will improve.  It's like at school, when her teacher uses an FM System -- a microphone that is automatically picked-up by her old hearing aid and a direct connection - she's less likely to pick up the surrounding noise - a distraction from what she needs to hear.  The FM didn't jive with her Ponto - but we will work with school and Dr. Steve to make sure she's getting the best possible hearing experience with her new devices.

While we heal another six months and await the bone to surround the screws -- come June, we can work toward the next phase of this permanent hearing solution.  I am hopeful that technology will take Andi's hearing to an absolutely higher level than it leaped even in June when we started this BAHA journey. 

We all want what's best for our children.  But when your child has a diminished sense, or senses - as kid's with CHARGE Syndrome usually have all five senses impacted -- improving one of those senses in the slightest fills us with hope and joy.

So, fingers crossed that this new technology impacts Andi with noticeable improved hearing.  Double the BAHA, double the fun!

Cautiously Optimistic

Recovery yesterday from surgery was as to be expected.  Uncomfortable, trying to master pain management, clingy, whiny, mopey, and overtired.  We sat on the couch together for the majority of the day.  Something I can't remember doing in far too long.  Just sitting and being.  Every time I got up, I had to justify where I was going.  If it was the bathroom, she wanted to come with so she could talk to me. Repeatedly, I had to tell her, 'no sweetie, I'll be right back.'  If I wasn't back soon enough, she'd call out to me.  She mainly wanted to sit right next to me, under the blanket.  And I was quite content with that.  In fact, I think I fell asleep several times while she tinkered through a ridiculous amount of videos on her two different iPads.  By the end of the evening, we both were tuckered and she fell fast asleep as soon as I crawled into bed with her.  She wanted to be close, she wanted to be with someone, she crashed hard.  In the middle of the night, she sat up straight in the bed and proclaimed, "I need water!"   This is not unusual, but it startled me.  I figured it was a good time to redose on the Tylenol, and then I laid there for awhile after wondering if that was a foolish mistake on what is surely an empty stomach.  Luckily, she did just fine.

A few things I'd forgotten about, since it'd been such a long time since we'd done a true surgery.  (I consider ear-tube placement a procedure, more-so than 'surgery!')  That would mean that prior to yesterday, Andi had seven surgeries and two procedures - since those last two (#8 and #9) were ear-tube placements.  In any case, when they took me back to recovery and she was still coming out of anesthesia, I forgot how spastic that can be.  She would have her eyes closed, and then suddenly, open them and sit straight up in the bed.  Her eyes would be open, but it's not like she was really there yet.  It was totally bizarre.  By the 4th or 5th time this happened, she saw me and I got a little wave before she laid back down and closed her eyes again.  She had an IV and all the leads attached to her for the monitor, and she would get all tangled in this mess of cords or wires. Another thing I forgot about was when I first saw her.  I leaned in and kissed her repeatedly.  That's when it hit me -- the smell!  The smell of blood was pungent and it took me back to the early recovery from open heart surgery.  The wave of memories flooded over me - instant transplant to those first few days of serious unknown.  One thing from then that still weirds me out was how cold she was. Her skin was very cold -- although they promised me, her body temperature, what she felt - was normal.  They explained, it had to do with the sedation medicine, but she was fine.  It was so weird though - it was like kissing the cheek of someone in the morgue cooler.  Creepy.  I've never shared the photos from that surgery, because it's one instance I don't want to share.  There were so many leads, wires, connections, pumps, monitors, and doo-hickey's -- it was the scariest and the most awe-inducing experience.

This is just a fraction of what we stared at those first four months of hospital living.  Especially when she was in heart failure, and we constantly watched her high heart rate, coupled with a low O2 reading.  

In any case, Andi had a great night's sleep.  She awoke and proclaimed she felt great.  We laid in bed together and just snuggled and talked.  I signed that it was raining outside.  I gave her the old 'over-the-ear' hearing aid (which we wore yesterday to keep the soft band from hitting her stitches, and we tested to see if she could hear the rain.  She sat up and said she could hear it.  I cringed knowing she could hear more with the Ponto, but I just don't want to push it yet with the stitches.

This morning, she has proclaimed she does not want to take any Tylenol or Ibuprofen.  We put the antibiotic ointment on her stitches.  I took a picture of one side, and then realized after I took it - that I didn't get the full incision ... so I took a picture of the other side.  These are dissolvable stitches.  We are to wait until Monday to wash her hair - so first thing Monday morning, we'll be taking an extra long, extra soapy bath and cleaning this rat's nest of hair.  In the meantime, we're laying low and relaxing.

Lastly, the ENT was able to place two screws on each side.  One of those on each side are what they refer to as a "sleeper" -- it's just inserted into the bone at the same time, so that if 5 years down the road, she hits her head and dislodges the post, they can simply go use the sleeper and not have to go through the whole six month waiting for the bone to grow around the screw.   Smart.  Different parts of the bone were soft, (she said this is due to age, not because she has CHARGE), but she was able to get them all in and she noted which ones would be the best to use.  For Andi, her BAHA's won't be totally symmetrical on her head, because one post will be higher than the other - based on the stronger of the two screw placement.  Luckily, with her long hair - it probably won't even matter.  Even yesterday, when she was whining about her own discomfort - we talked about why we did all this and even she agreed, she wants the best possible opportunity to hear as well as she can.  So, we're on the other side of step 1 in this two-stage process.  To quote something we heard early on in the dark days of unknown, we were then and are again today, cautiously optimistic.